I’m a single, 62-year-old woman and in June 2024, I was diagnosed with cerebral venous sinus thrombosis. This came out of nowhere. I had been feeling down and unwell for a couple of days. I thought it was mostly dehydration.
I was able to work from home and was typing on my laptop when noticed that something different kept appearing on the screen from what I thought I was typing. I had a friend renting a room from me and I commented to her that I wasn’t feeling right. I was walking through the house I walked right into a cabinet.
My roommate asked if I was okay. A little later I ended up on the floor and my roommate said, “I think you need to get someone to take a look at you.”
I argued with her a little then said to call an ambulance. I was very aware and answering all their questions, but at some point, I lost consciousness and woke up in a hospital ICU 40 miles away.
The hospital ran tests and scans and eliminated the usual suspects like cancer and other diseases. They finally found a CVT in my brain in the dural sinus. I was put on blood thinners and monitored closely for two weeks. I did some rehab in the hospital and moved to outpatient rehab two weeks post-event.
I don’t seem to have any physical deficits. What I discovered was a delay in my executive function. I was very aware that my caregivers wouldn’t know that if I wasn’t honest about how I was feeling. Emotional releases, feelings of vulnerability, and fatigue became a common occurrence. I’m now one-year post-CVST, still healing but optimistic and thankful I’m still here.
I later tested positive for factor II prothrombin G20210A gene mutation, which means monitoring while continuing to take blood thinner for a few more months. They want to be sure the clot is completely gone. There is a chance with the genetic marker that I may take blood thinners for the rest of my life.
This experience cracked my heart open. I’m thankful that I have so few changes, yet everything has changed. My perspective, my attitude, my emotional responses, it’s a wake-up call in a lot of ways.
Resources
CVST Patient Stories
Factor II
Living Your Best Life on Blood Thinners
